I can't believe our baby girl is turning 10 months this weekend! Time sure flies, I just wish we could freeze them in time, or command them to stay the way they are forever and have them obey lol!
Miss K is a beautiful, always happy, always smiley, little flirt of a girl and we absolutely adore her for it.
We had her 10 month Cardiology check up today and it went VERY well. She weighs 16.4 pounds with a cloth diaper on, so probably 16 pounds even. I'm not happy about her lack of weight gain these past months but nobody else seems bothered by it so I guess she's fine.
Remember our missed Propanolol dose last month? And her 4 SVT episodes in a short 2 week period? Well, Miss K's EP Cardiologist was EXCITED to hear we had accidentally skipped a dose and that she had breakthrough SVT...say WHAT? yes I wrote that correct, he was excited! I was quite shocked. He was excited because it's really the only way to know if the Propanolol is doing it's job or not, also a great way to find out if it's the Amiodarone that's doing all the work instead. He was very happy to hear that she experienced no less than 4 SVT episodes in the 2 weeks following the missed dose, this means the Propanolol IS doing it's job and that she IS 100% dependent on it and that the Amiodarone may not be needed at all.
We talked about our plan of action for the future. Right now Miss K is taking 6 ML Amiodarone once daily, at one time this was a HUGE amount for her tiny little body but as of today it's now a very low dose. They recommend 5mm Amiodarone per Kilo in weight, Miss K's 6ML dose is only 1mm per Kilo. We will not be adjusting her Amiodarone dose, it's staying where it is. Miss K's EP Cardiologist will be taking her off of the Amiodarone in August for sure, no question about it, he is dead set on this decision. He has decided he absolutely does not want her to be on the Amiodarone for more than 1 year. He is confidant we may start experiencing more SVT episodes monthly without it but as long as we can get her out of it ASAP and easily he is not concerned. If Miss K's SVT episodes end up being more than we can handle then he wants to try putting her on Sotalol and Flecainide instead of Amiodarone, if this works then great but if not then he'll be putting her back on the Amiodarone. Can you see me jumping up and down in celebration? If not you should be able to hear me screaming with excitement because I am LOUD!
Because Miss K has not outgrown her PJRT and is most definitely having persistent episodes of SVT it is a positive thing that she WILL NOT outgrow her condition :o(. 2 months just isn't enough time for that and after 1 year it's not going to happen for sure.
The EP Cardiologist adjusted her Propanolol dose from 2ML to 2.8ML three times daily.
Miss K will be going back in to see the EP Cardiologist in August when he will take her off the Amiodarone. She'll wear a Holter Monitor a month after that to see what her heart is doing without the Amiodarone and then we'll go from there.
Miss K got what may possibly be her last blood draw done today as well (See Side Effects). The lab technician was great, she got the vein on the first try and the blood drawn before Miss K really got to cry. It was smooth and easy and Miss K left with a bright green BandAid to match her green and yellow outfit she was wearing. I'll update later after I hear the results from her EP Cardiologist.
Oh, and an update on my last post:
A day or two after I posted she popped out of her tired slump and became her happy little self again, actually a more happy and giggly little self than before. I think she may have just been growing, or even more possibly fighting seasonal allergies.
Lots of great news today, it was a good day. Among all of the great news I was happy to get to receive it alone with Miss K, we got lucky enough to get to leave Big Brother and all his distractions at home with his Auntie and Mommy was happy to have some quality alone time eating lunch out and going to the Dr. just Miss K and I :o).
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